For those suffering through the painful cramping and lack of movement that leave hands balled into a fist here is something that helped us.
Always, always talk to your doctor FIRST, before you make any changes. But, we were often, very often, met with a complete dismissive attitude and comments like- this is part of the journey....
First ask if there is any nutritional issue that might cause your hands to lock down, like low calcium or magnesium or dehydration. Ask if there is ANY benefit to the mind or body by having this happen. Then let them know you will be actively pursuing ways to change the situation. When they roll their eyes at you, please, please- resist the urge to slap them upside the head but you ARE ALLOWED to mention that you see their lack of enthusiasm and confidence and remind them you are still alive and so you will be making efforts to improve your quality of life even if they have given up on you. (Too harsh?....well...maybe....but when I got to watch them eat their words it made up for a lot of bad behavior on their part and it kept them from being so dismissive the next time we chose to solve a problem they had no answers for).
A reminder: Just because THEY (whoever is telling you "it's impossible") do not have the answers you are looking for does not mean there is no answers. It means THEY do NOT have the answer. Keep looking.
I know we were not typical people or journey so I will share my experience knowing it's not for everyone...but it worked for us so I am sharing it.
My husband's hands started curling up to the point his nails were digging into his palms. We got the "Damn blue mitts" and while yes...technically, they did their job, they restricted any movement he did have left and they annoyed the crap out of him. Also they slow down circulation.
I did research to see if there was ANY benefit to his hands curling up. WHY would the body and mind choose to do this. I could find no positive reason to allow this. Always ask the doctor before you make changes but my experience is they just tell you that is the way it is and is part of the journey. NOT TRUE for all!!! If it's not true for all then there is a REASON it does NOT have to happen for you (My opinion). First of all look up videos for acupuncture and acupressure. There is a spot between the thumb joint and index finger that if you massage or press on that spot it will help release the hand if it's been locked down. Look for videos on You Tube.
I am a hypnotist so after a short while (a week or so) I took the mitts off and threw them across the room and emphatically stated YOU DON'T NEED THOSE! My husband LOVED a massage of any kind any time any where (and I mean that in all manners and meanings). This was the 2nd positive reinforcement. While I massaged his hands (with coconut oil but you can used Essential oils if you would like but make sure you know the correct ones and what to mix them with) I told him I researched and that this is a mistake by the mind and body as it's trying to adjust what is going on with all the changes. I repeated that it makes no sense "does it" (subconscious implication to answer in his head to agree with me) that if he is losing strength his grip should loosen not tighten. (Even if this is not the truth of the actual situation the subconscious is listening). I continue to massage because that keeps his conscious mind busy enjoying the feeling of touch as I continue with great confidence and said -LOOK it's working already. His hand of course WILL be looser because you have been working with it. The body follows what the mind tells it to do. If you give it NO instructions then it will follow whatever preset is in there. He is Motivated to have this work even if he doesn't consciously believe it's going to work because the body and mind naturally want to move away from pain. If this works then he gets continued massages. Another reinforcement.
His hand relaxed dramatically after the first session and continue to relax more and more and within a week or so it was comfortable and no longer balled up. As often as I could I would pick up a hand and massage it, flex it, stretch it and repeat that it feels better doesn't it? Yes. Good. Then ASK them- How does it feel to you? Hopefully you will get a nod if you can or an eye brow quirk. Repeat often. Point to the GOOD, the improvements. Make them PROUD of their success.
Circulation plays such a big big part in the health for all. The more you move any part of the body in any way the better we found. So many issues have to do with Immobility- not necessarily "ALS" as such. Doctors tend to lump it all together but it's NOT. Scalp massages also help over all quality of life and are often over looked. How many times a day do you touch your face and hair???? I hope this helps. I would love to hear back from anyone who tries this or something similar . I am always looking to learn. Good luck.
